Wednesday, August 29, 2012

what cancer can't do

Awhile ago Halle and I checked out a book about the body from the library.  Halle loved to go through it and identify body parts and organs.  Every time we got to the page about digestion she would point to the big gray colon that winds around the abdomen and say the doctors took that out of daddy.  I wanted a picture of his body as it is now, so we will have it to see how far we have come.  The glare from my camera covered up the bright red piece of intestine and I took a picture after he had just placed a new bag, so basically I saved you from viewing poop, but this is what cancer has done to him.  (And this is where I add my little colon cancer plug and plead with you to not let this happen to someone you love.  Anyone over 50 needs a colonoscopy.  This cancer is preventable and very treatable if caught early! Don't delay, that means you mom and dad.)  Wes's body has become so altered since his cancer was discovered.  There are scars all over his abdomen, and tattoos from his radiation treatments, he is missing a major organ, a piece of his insides is now on his outsides, he has a port placed under his skin threaded through to his heart for chemo, and he is forty pounds lighter and missing a bunch of muscle from lying in a hospital bed on a feeding tube for three weeks.  When most people have colon cancer, the cancerous piece of their colon is removed and the rest is put back together so they have a colon that functions well, but is just shorter.  Wes's two tumors made that type of surgery very risky and so they took everything out.  What is left is a portion of his small intestine that they have fashioned as a pouch that will try to perform the duties of the colon as best it can after chemo and another surgery.  For now, he still needs to poop while his new pouch heals so they pulled a piece of his small intestine through his abdominal wall.  Every four days he adheres a bag to his skin that catches his stool that comes through his intestine.  He has no control over this function.  It is very watery because the colon's job is to absorb the water from the things you ingest.  When you have no colon the water has no way of being absorbed.  This piece of small intestine is called an ileostomy. In the picture above you can see Wes's bag.  When everything was new Halle would tell the neighbor kids that her daddy had a poop bag.  We don't really encourage her to say the word "poop" around other children so we told her she could name it something else and that she had to keep it a secret so she wouldn't be known as the kid who talk about poo. Without even hesitating she said we should name it, "Mary Jenkins."  And so the name has stuck.
The picture I took hurts my heart to look at.  The scars on him and the things I have seen happen to him have put scars on my own heart.  I thought I would post this picture next to another picture of him from a few months ago, but the contrast is too painful to look at right now.  Cancer has not only altered his physical appearance, but has altered his work schedule, his duties at home, and his ability to go out.  Chemotherapy keeps him confined to home, work, and church if he is feeling well.
I watch a man who was once strong and seemingly tireless, struggle to hold our one year old on a walk or become exhausted from small everyday outings.  I watch him struggle to eat at the dinner table every night.  I try so hard to make meals he loves and am so disappointed to find out everything tastes like cardboard or metal because of the chemotherapy.  It kills his tastebuds.  Every single meal is a chore and there are times when he longs for a feeding tube.  His ileostomy makes it easy to become dehydrated, especially while on chemo and his struggle to drink enough fluids is an ongoing battle.
During chemo week I make all of his meals because the chemo affects his ability to touch and drink anything below room temperature.  It is painful for him to reach into the fridge or swallow even the water from our fridge with no ice.  The man loves cereal, but has to eat other things because of the cold milk.
Whenever I change the sheets it takes my breath away to see his hair all over his pillow and the mattress.  Although, his type of chemo is not supposed to cause hair loss, he has lost about 35% of his.  And let's be honest, the man had grrrrreat hair to begin with.
He usually gets up at least once a night to empty his bag and I listen closely to make sure I don't hear any vomiting sounds. Each morning I wake up wondering if he will feel well or if we'll need to race off to the hospital. I worry about him at work and I hate to have him out of my sight. He just seems so fragile these days.
His feet and hands have started to sustain nerve damage and are numb throughout his treatment weeks. He is actually going to be pulled off one of the chemo drugs early because they don't want to cause permanent nerve damage and affect his ability to walk or play sports.
He will endure another surgery to take his small intestine back inside and hook up his new plumbing.  He will have to learn to control his poop all over again and rebuild his muscles.  They consider this takedown surgery a success if you are pooping 8-10 times a day.  It will be his new normal.
Words like "chemo" and "cancer" have become a part of our four year old's daily vocabulary.  She worries about who will watch her when daddy goes to the hospital.  And can't wait for the day his ileostomy is gone because it means he will be better.
There has been a shift in the running of our household.  Our children have even felt it.  A few months ago Halle started saying, "mommy is the boss now."  A lot of the things he used to do around the house are now my responsibility.  I don't feel like I do them as well as him and sometimes forget, but somehow everything gets done.  He is still our patriarch and I look to him as the head of this family, but I don't shirk my responsibilities to "lead out in love" to make sure family prayer happens, and scripture study, and the trash gets taken out, and the bills are paid.  I really had no idea just how much he did until I was forced to do it all.  I think as wives you will find the same with your husbands.  Don't wait until your husbands can no longer do the things they do to contribute to your home to thank them.  Let them know now what their contribution means to you.
As I look at this picture I see just how badly his body is broken.  But I also see just how much his spirit is not broken.  Through all of it, just like in this picture, there is always his smile.  That never ending smile that greets the nurses who give him chemo.  The smile that is always ready when little girls come to play or show him a pretty dress.  The smile that is still teasing me and making me laugh in the face of truly horrible things.  The smile that is there even when he is swimming in chemo induced nausea.  The smile that is there every sunday as he walks tall into church and looks at me across the bench as he holds Lily on his knee.  And the faith I see in his eyes that never wavers as he quietly confesses, "this is so hard."  His faith and enduring spirit are not broken.  That is something cancer can't touch.

Thursday, August 23, 2012

bell family olympics

 Halle is at a fun age where most anything can be turned into some kind of interesting activity for her.  The summer olympics were a perfect opportunity to plan a fun day for her.  She didn't know much about them so I explained them a bit and then we got to work.  We painted an olympic ring sign, colored our own american to flag to wave at the bell olympics, and decorated red white and blue cookies for an american treat to eat during the opening ceremonies.  After dinner we set up a marathon course around the neighborhood.  We took the olympic torch down to the starting line with the olympic theme song playing the whole way and Halle prepared to run by getting in the blocks (she was just going off the video of track and field that I showed her).  
We shot off a gun and she was off.  The first leg of her race was running.  
This girl is fast and has better form then I did when I ran cross country. 
The second leg was biking.  
She followed the arrows around the neighborhood until she reached the hurtles (which were really just buckets she had to leap over).  
She ran through the finish line and won the gold medal for team USA.  
Her adoring fan Lily was there waving the flag and cheering her on.  
She wanted to race again and again until it was time for the London opening ceremony and treats.  I love creating a little magic for children, it was one of my most favorite things about teaching and doing it for my own little ones is even better.  
Sure do love these sweethearts.

Friday, August 10, 2012

it's a wonderful life

Sometimes I look around at all the medical supplies, hand sanitizers, medications, and at my suffering husband and think to myself "is this really my life?"  But then there are so many more times like the other night when Wes and I laid in the middle of our bed with two sleeping children on either side of us just holding hands and talking or a sunny saturday with a hose where I think "i have the most wonderful life."  

is there anything more thrilling then spraying your big sister?

it is a wonderful life: cancer, baby tantrums, early mornings and all.

Monday, August 6, 2012

halle turns four

I've discovered it is much easier to have a birthday party on my child's actual birthday, because if I don't I plan a party and then feel I have to do something again to mark her actual birthday.  These days chemo doesn't give me a choice and so I planned a party right before he had chemo and then we celebrated Halle's actual birthday post chemo.  
She has been so obsessed with actually turning four.  She was a little bewildered when she discovered she was still three at her party.  The morning of her birthday when she knew she was finally four she made me watch everything as if I had never seen it before.  "Mom, see how high a four year old can jump" and "Mom, come see what a four year old's pee looks like."  And yes I did actually go look to please her.  
I let her plan her special day and here is what she came up with:
Watch "My Little Pony" and eat eggs in the morning
A trip to the dinosaur museum with an ice cream cone to top it all off.
Open the lalaloopsy package from grandma and grandpa nimer that had been tempting her all week.
JCW's chicken and french fries for dinner wearing comfy pajamas (my kind of girl!)
cake and presents with the Bells
Lily was all about the cake.
After cake she opened all her gifts from family and was very pleased with the loot.
She had been asking for the barbie dress designer for-ev-er and was so happy to finally get one and design her own dresses.  

 Her big surprise was a big girl bike with all the barbie accessories including streamers, a basket, and a horn.  She hopped right on and rode around for the rest of the night.  
Lily had to try the helmet.  
Every time this girl's birthday comes around I can't help but think she is such an amazing kid that she deserves the world.  I have said this so many times, but we really love to celebrate this girl!